Oval: Q. I’ve heard I should keep out of bright sunlight, is this true? A. Yes this is true for DM/PM and JDM/JPM patients, as it can cause a ‘flare’.   Q. I get tingling in my scalp and other parts of my body.  Is this related to my illness? A. This phenomenon is often described by myositis patients.  Whether it is disease related, or treatment related isn’t known. Q. What if I get pregnant? A. First of all the myositis condition shouldn’t affect your baby.  However, some mothers do experience the symptoms of myositis getting  worse during pregnancy.  Secondly, the medicines you take will get into........... baby’s bloodstream, so it is very important to requ  

Here are some examples of the chapters; there are many many subjects covered, including case studies, chapters written by professionals on the history of myositis, an introduction to myositis, treatments, nutrition, dysphagia, counselling, complementary medicine, emotions and an exercise programme specifically aimed at people with this rare muscle condition etc etc. 

 

Questions & Answers

 

 

 

 

 

 

 

 

 

 

 

 Treatments

 

 

 

 

 

 

 

Oval: CPK (or CK) level - Creatine Phosphokinase - an enzyme found in skeletal muscle.  When the CPK level is substantially elevated, it usually indicates injury (e.g. Myositis).  A simple blood test can measure levels of creatine phosphokinase.  A value of between 25 and 200 is usually regarded as normal (although hospitals vary greatly in the levels given as being within normal limits) , and levels can escalate into the thousands in patients with active disease.  Hence a myositis 'flare' is often diagnosed by a sharp increase in CK or CPK values. CRP or C-reactive protein.  A factor found in the blood produced by the liver.  High levels indicate inflammation occurring somewhere in the body......   Glossary of Terms

 

 

 

 

 

 

 

 

Oval: Jen's Story Back in the summer of 1998 I was scared that I had a serious illness. (which I couldn’t even pronounce!). Scared that nothing much was known about it. Scared of how it would affect my immediate family. (How would my 3 daughters cope with a mother who suddenly seemed ‘useless?’). On June 16th 1998 (a sunny day) my husband escorted me to see a private rheumatologist.  I was with him for about 2 hours and I think he knew already, before any tests were done, what I had......................     Patient's Stories          

Oval: Immunosuppressants - These include prednisone and prednisolone (both are corticosteroids), Maxtrex (methotrexate), Imuran (azathioprine), Neoral/SangCya (cyclosporin), Cytoxan (cyclophosphamide), Cellcept (mycophenolate mofetil), Prograf (tacrolimus) etc.  All of these treatments suppress the normal immune responses (reducing the activity and proliferation of immune cells such as lymphocytes), which in the case of myositis sufferers are thought to be inappropriately damaging normal muscle tissue. IVIG - Intravenous immunoglobulin.  Normal antibodies extracted from pooled blood from donors can be given by an infusion...............................